new dianosis

I get IVIg at home every three weeks. I get 30g/day (a very low dose due to kidney problems) at a rate of ~ 100mL/hour. It takes 3 days and usually runs over the weekend (just the timing of when my nurse can get here.) I’m extrememly satisfied with my home health care nurse and feel he is competent and knowledgable about IVIg and CIDP and the regular IVIg has made a huge difference in my improvement. I call it the IV-I-go-go-go juice. 😉

Julie

P.S. Is plasmapheresis an option? He may need to do a total reset – strip out all his confused antibodies and start over. I know I resisted this when I was in the hospital but it probably would have cut down on my recovery time if I’d done it, it’s taken a LOT of IVIg to get back what I lost.

Hi!
How old is Josh? My son is 11 y/o and has cidp. We were dx 20 months ago. Currently we get ivig every month over 4 days 6 hours and 40 minutes each day. It has helped Kevin tremendously. Any info you get from here is so invaluable, but you must remember, each person is different and what works for one may not for another. That being said, our doc wanted to do steroids, but I refused. The obvious reasons were, cataracts, bone density loss, affecting puberty, mood swings, weight gain and so on. As I started investigating more, I realized that one of the side affects (possible) was leg weakness, so I felt it would be hard to discriminate between steroid weakness and cidp weakness. Once you are on steroids, it is hard to get off, and lateley on the site I have noticed many stating the steroids stopped working after a while. On the other hand, others have good results with steroids and minimal reaction. If a few doses of ivig alone do not work, you MAY have to include steroids in your plan. I always have that in the back of my head.

How long has this been going on? For my son, it was about six weeks from the first symptom to treatment. He was about like your grandson from a large notor skills stand point, but his autonomic responses also were affected, constipation, urinating and breathing. We were in icu for 6 days and a regular room for 5. The reason I tell you this is because today, he plays pretty much like a normal child. I won’t lie, he has pain in the mornings and when he over does it he has alot of pain in his ankles the next day. For the most part, life is pretty good compared to what it could have been if it were MD as originally dx (cmt, a form of md with no treatment) WE HAVE TREATMENT!!!! If one does not work, another will!! Keep hope.

We infuse at home with Coram healthcare. We love our 2 main nurses, the one is a guy, and he and Kevin shoot air soft guns in the basement, play guitar hero, etc. etc… Way better than the hospital. If you have any questions or would like to talk, you can private message me your number or I can give you mine. Good luck, there is a light at the end of the tunnel, and your family will be stronger by the time you get to it!!!
Dawn Kevies mom

It does sound like your grandson Josh does have CIDP. On a more positive note, it does sound like he was responding to the IVIG as well as the solumedrol (steroid) treatments. That means that he probably has the relapsing/remitting CIDP as opposed the the progressive form. The fact he is a teen is also good, as I have been reading this forum for almost 6 years now & young people seem to make better recoveries, many even going on to complete remissions.

Right now the most important thing for him is to get on a regular schedule of IVIG & maybe even solumedrol until his symptoms are under control. Initially it might be once a week, or every other week, or once a month; whatever it takes to get him back to normal. I am not opposed to solumedrol treatments, as I was on them for 21 months & needed them to give me back just enough to stay out of a nursing home. But I would use IVIG as a first choice of treatments, mostly because of all of the adverse side effects that Dawn mentioned.

I really feel for your grandson, I know that at first this illness seems like the worst possible illness in the world. But as time has gone by I realize that there are much worse things once can get & at least CIDP has various treatment options. BTW I got my IVIG & solumedrol infusions at home (once I got out of the hospitals after 4 months.) I actually looked forward to my home health care nurse coming, as we became good friends. My IVIG only took 2 hours 30 minutes, but I was getting it once a week back then. My solumedrol infusions took half an hour, got both on the same day. I wish him all the best of luck, things will get better for him, trust me…
Pam

I agree with the others and also get IVIG at home every other week with Solumedrol. I am doing extremely well at the moment with this schedule but it is trial and error in finding something that works. I would ask about the IVIG again since it sounds like he had a nice response to it. Good luck and ask whatever questions you have! Gabrielle

Just a little something I was thinking about, it is not the steroid, ivig, or pp that makes you get better, it just stops the continual demylienation and by the attacks stopping, it allows the nerves to start repairing. The process is long and only happens if the process is stopped, ie, good antibodies out produce auto antibodies.

It takes a long time for your body to heal ITSELF, for instance, the nerves can repair at a mm a day (as mentioned, provided no further attack is happening, every time you relapse, you start from zero) So that is 365 mm a year in optimum conditions, My math stinks, but I think this is the conversion. 365mm equals 36.5 cm which converted to inches is 14.37 inches total per year that you can heal, provided there is no axon damage or further demylienation. So, as you can see, it takes a really long time. Ivig does also help with inflamation of the myelin sheath, so that too could make a person feel better and get transmission to the muscles. Kevin has just now started strengthening his muscles, I actually see some tone in his arms, calves and thighs. So whether it is gbs or cidp, you really do Get Better Slowly (GBS) with both.
Dawn

Hi I hope he gets more then 1 day a month of IVIG He should get the full loading dose of 5 days then every few weeks as needed more IVIG but I think maybe more then 1 treatment. Also the prednisone has some serious side effects

Has plasmapheresis been suggested?

I wish you all the best and keep us updated on you both.

Sue

Hi there,
Yes i can imagine this is all a bit of a nightmare for you all. As the others say things do slowly get better, but it is so hard at the begining. Maybe your neuro was always suspective of CIDP but not wanting to cause alarm etc by providing the diagnosis until a few more relapses/epidsodes had a occured. I only say this in relation to the pred being given on initial treatment etc as it does seem to be quite well known that you dont give GBSers pred, and it only benefits CIDPers.
I would be concerned however at the o pred being given. Pulse steriods (high dose usually given orally or iv at a st period eg weekly, or fortnightly) does seem to be accepted as having less long term side effects and issues and as your grandson is so young i would be asking if htis was an option etc.
I consider myself tooo young (34) to contemplate steriods but have had no choice really as the twice weekly ivig and the immunosuppressants werent really touching me. Have been on the triple treatment of pulse prednisolone, immunosuppressants, and either twice weekly or weekly ivig as an outpatient since end oct 2007. (takes about 3 hours once a week for my IVIG and methly pred) before this i started presenting similary to your grandson and the docs were (rightly so)not wanting to throw all these drugs at me un-necassarily but unfortunately i just continued to relapse worse (about every 8 days post ivig) and worse each time until i was a quadraplegic. we then tried the above treatment regieme and there is no looking back now. Am about to do my first duathlon in 3 weeks, a year to the day that i was first admitted with ?GBS, and 6mths from learning to walk again.
Doc Gareth Parry who is on this medical board has recently done some research which is indicative of the pulse solumedrol being a better option ie good outcome and less side effects etc. It was due to be published early this year so maybe your neuro is happy to contact him etc.
all the best and i strongly agree with all the other comments suggesting Josh be on regular ivig, he needs to have had a full loading dose and then be on regular infusions and in close contact with neuro. A great piece of advice given from my neuro was that if i was feeling weaker for 3 days in a row get in touch with him. It is sometime hard to accept you are going down hill again or getting weaker especially when you busy etc and the mind can find ways to justify weakness etc ie over-exertion or just a bad day etc. if josh has 3 days of clumsiness or progressed symptoms – numbness etc, get him back to neuro. It does not pay to let the symptoms get worse!!!!!!!
Kai kaha
stay strong

READ,READ AND MORE READING. Thats all I ever do. Science daily on the internet, type in random things on google search for example one time I typed in “new protocol for cidp treatment” You can be lead in all different directions. There is a symposium in Chicago nov 7,8,9 doctors that are on the boars and doc. from everywhere come and you get to ask questions. Good luck! Kevin gets his monthly dose tommoprrow and the next three days after, so Josh and Kevie will be getting them the same time!
Dawn Kevies mom

Wow,
Great news about the walker!!! Yes, I am going to go. They had a mini meeting for the local people a couple of weeks ago at the facility they are planning on usung. It is a hilton resort and the rate is going to be $99. If I put my fuzz buster on and ther is no traffic, I can be there in 15 minutes. If you were planning on going, I would reccommend saving some extra time and booking another hotel after the symposium and go downtown. Chicago is an awesome palce to visit. This place is about 40-50 minutes from downtown. (hotel rates are better in Bloomingdale, no parking charge etc….) I am going to pm you some other info., so check your messages.
Dawn